Recently diagnosed with LS and looking for support

Dear Mander.

I assume your clitoris is still in place as well as the outer labia as with LS all this disappears with time. Gynis describe LS to be sticky and therefore in time everything disappears. please start using coconut oil every time you use the toilet keep your vulva oiled in order for the skin not to become sticky and everything in the vulva to disappear.

I use Dovate which is a cortizone cream which keeps the LS under control in the vulva and anus area.

all the best.

Mander, I find it interesting that one of your symptoms is inflammation inside your vagina. Not sure anyone on the forum has mentioned this before. I went to see a gynecologist a year and a half ago to request a prescription for flagyl due to fleeting vaginal itch and sometimes odor. I had only mild external discomfort which I assumed was from atrophy. I was diagnosed with LS, told it did not affect us internally, only externally and was prescribed a hormone cream and steroid ointment. The dr's explanation re the internal itch was that what was happening externally just felt internal. I did not agree with her assessment and insisted on the flagyl with the agreement I would try using the hormone & steroid, but if the itch persisted I would use the flagyl as well. I ended up using it and the internal itch immediately lessened though it did take longer to stop completely.

The LS responded very well to the meds over the next months & seemed to clear, but then returned. Eventually I was put on a stronger steroid until that stopped working. Am now using Tacrolimus (after seeing a dermatologist) along with the steroid and hormone cream. I think you will find that the steroid makes a big difference, but I do wonder if your internal symptoms aren't caused by something else. In my case it was bacteria, other women sometimes have yeast along with the LS. How long have you been using the clobetasol, do you apply it internally as well?

Mander,

In the medical journal articles I have read I have never come across a case where LS was the cause of burning inside the Vagina. That sounds more like vaginitis or osis or something else and you should get tested. In the meantime, try soaking in a baking soda bath or look up the borax solution you can make and pour on yourself when you go to the bathroom. It does sound like you need a culture and a biopsy. I had both and the biopsy did not hurt like I thought it was going to. Not fun but definitely not terrible. Best wishes

Yes, sometimes I get the symptoms more prevalent around the anus and between the butt cheeks and it is very painful. I also get fissures which I didn't realise until some time after the LS diagnosis are related to the LS. One of the things I find with LS is you just can't ignore this delicate part of the body anymore, something that was easy to do in the past. It really needs to be looked after very tenderly even when you get it into remission, which is possible with the steroid ointment. Anytime I have had to address a flare up I can find I have let go taking care of that part of the body because it hasn't been causing me any pain.

Mander

If you have vaginal soreness it wont be LS causing it. As others say, its possibly thrush.

The alternative could be Lichen Planus, which I have, and which can cause vaginal problems with pain and burning and discharge.

I dont mean to muddy the waters here, but I was initially diagnosed with LS, even with biopsy. But a dermatologist in vulval health rediagnosed me. I have to say that if you have the white patches around the anal area then it will be LS as LP doesnt present with that. Otherwise they are similar and treatment is more or less the same. Architecture disappears the same. Clobetasol is used just the same, as is moisurising treatment of your choice. Good luck with it all and I hope you can get some relief asap.